Stories behind the evidence
The Living Library
Real experiences, reported accounts and medical case narratives. We distinguish stories told by people from stories reconstructed using published clinical evidence, without changing the facts or the original sources.
9 personal and reported accounts
51 clinical case narratives
3 studies in the Research Library
The family story that started the campaign
Julian Porter
Julian's family shared his history and the medical evidence that raised questions about years of psychiatric treatment. This is a family-provided story, not an anonymous published medical case.
Read Julian's story →People behind the diagnoses
Personal stories
9 family-provided, first-person and reported accounts. A memoir, an interview, an inquest or an online family account are different source types, so each story identifies where its information came from.
In their own words
Published memoirs and first-person accounts, with the original reporting clearly attributed.
Published memoir and interviews
What happened: In 2009, Susannah Cahalan was a 24-year-old New York Post reporter when she slid into paranoia, hallucinations, and seizures. She was on her way to a psychiatric dia…
The test that told the story
CSF (spinal fluid) anti-NMDA receptor antibody testing.
Published first-person account and interview
What happened: Elise Seymour, 18, a waitress from Basingstoke, Hampshire, became ill in the autumn of 2025. In the emergency department on 12 October 2025 her presentation made sta…
The test that told the story
The lumbar puncture and brain imaging that showed inflammation — with the specific antibody confirmation, as noted, unresolved between her two tellings.
Lives documented through reporting
Interviews, family accounts, legal records and inquest reporting. These are human stories, but are not presented as directly submitted testimonials.
Published interviews and charity profiles
What happened: In October 2016, Lucy Dawson, a 20-year-old student from Grimsby, England, was detained under the Mental Health Act for what was treated as a severe mental breakdown…
The test that told the story
Anti-NMDA receptor antibody testing.
Reported family and clinician interviews
What happened: In January 2009, Emily Gavigan was 19, a sophomore at the University of Scranton, when she slid into paranoia — convinced a truck was following her, warning her fami…
The test that told the story
Anti-NMDA receptor antibody testing (blood / spinal fluid).
Court record and subsequent reporting
What happened: Emilee Williams of Springfield, Missouri, was 19 and in counselling for anxiety and depression in 2011. Her primary-care labs that year showed elevated liver enzymes…
The test that told the story
Brain MRI — the scan her family had been requesting — read at a specialist Wilson's disease centre.
Coroner's report and inquest reporting
What happened: Mia Maisie Lucas was 12, from Arnold in Nottinghamshire, when she changed over the months around Christmas 2023: visual hallucinations (men in black overalls, a "vam…
The test that told the story
Post-mortem NMDA-receptor antibody testing — and, in life, the lumbar puncture that was never attempted.
Patient narratives from medical literature
Medical case stories
51 readable stories based on individual published medical cases. They describe real diagnostic paths, but they are neither firsthand interviews nor research trials. Explore the original evidence in the Research Library.
Showing 9 of 51 medical stories
Adapted from published clinical literature
A body in decline In February 2025, a 36-year-old man presented for evaluation of progressive weakness and drooping eyelids. His decline had begun approximately one year earlier wi…
The test that told the story
24-hour urine copper 956 micrograms/24 hours; ceruloplasmin 7 mg/dL.
Adapted from published clinical literature
A psychiatric onset A 27-year-old woman, who had undergone surgery a year prior for a right ovarian mature cystic teratoma, began to experience a sudden shift in her health. Two mo…
The test that told the story
Cerebrospinal fluid anti-NMDA-receptor antibodies: positive.
Adapted from published clinical literature
A sudden shift In May 2022, a nine-year-old boy was admitted to a psychiatric unit with an abrupt, severe onset of obsessive-compulsive disorder. Less than 48 hours earlier, he had…
The test that told the story
Anti-DNase-B titers 460 then 838 U/mL; infection evidence alone does not prove PANDAS causation.
Adapted from published clinical literature
Ten years of depression A 48-year-old Japanese man had been living under a diagnosis of depression for ten years. He was prescribed 60 mg of duloxetine daily. Over time, his condit…
The test that told the story
Serum cortisol below 0.05 micrograms/dL and ACTH 2.0 pg/mL in the reported workup.
Adapted from published clinical literature
A body in metabolic strain A 51-year-old man carried a five-year history of hypertension and diabetes mellitus. Despite treatment with multiple medications, including nifedipine, i…
The test that told the story
Serum cortisol 707.54 nmol/L and 24-hour urinary free cortisol 836 micrograms/24 hours in the reported endocrine workup.
Adapted from published clinical literature
A shadow of anxiety A 56-year-old African American woman had a medical history that included nodular thyroid disease and anxiety. For her anxiety, she was prescribed 10 mg of Valiu…
The test that told the story
Thyroid autoantibodies alongside neurologic and CSF findings; antibodies alone do not establish encephalopathy.
Adapted from published clinical literature
A two-decade label A 69-year-old man had lived with a diagnosis of schizophrenia since the age of 47. For over twenty years, he had been institutionalized in a psychiatric hospital…
The test that told the story
Anti-SOX1 antibody strongly positive (++) in the reported paraneoplastic investigation.
Adapted from published clinical literature
The first episodes At 10 years old, a girl began having multiple episodes of seizures. The first occurred in February 2021, when she was hospitalized with a fever, difficulty maint…
The test that told the story
Anti-endomysial IgA 1:10 (positive), considered alongside the clinical and intestinal evaluation.
Adapted from published clinical literature
Worsening anxiety and a bite A 38-year-old woman in Rio de Janeiro, Brazil, lived with a history of generalized anxiety disorder and hypothyroidism. She managed her symptoms with d…
The test that told the story
Lyme serology (ELISA/Western blot): IgM positive in the reported evaluation.
Topic groups are navigation aids based on source descriptions, not diagnoses or evidence grades.
Context beyond individual cases
History & perspective
Medical history and campaign essays are editorial pieces, not patient testimony or clinical trials.
Historical research and reporting
What happened: In the early 1900s, pellagra filled American mental asylums. Its "three Ds" — dermatitis, diarrhoea, dementia — meant thousands of people were institutionalized as i…
The test that told the story
Dietary and niacin assessment — the original "lab before label."
Have a story to share?
We welcome documented personal experiences. Public social posts discovered by researchers are not treated as contributor-submitted stories without a clear original source and permission to republish.
Share your storyEducational stories only. They do not diagnose individuals or establish treatment recommendations. Discuss personal medical questions with a licensed clinician.